Trial By Error: Some Things I Read This Week–Scathing “Effort Preference” Analysis; Kids with Long Covid; National Academies’ Long Covid Definition

By David Tuller, DrPH

An in-depth pushback on “effort preference”

When the U.S. National Institutes of Health’s long-delayed “deep phenotyping” study of a handful of ME/CFS patients was released earlier this year, the focus on a weird construct called “effort preference” sucked up all the attention–in part because the paper placed it front and center, in part because no one else knew what the hell is was or what it meant. For reasons that remain best understood by the investigators, they chose to concoct this metric out of a test designed to assess motivation in psychiatric patients. The decision-making involving this analysis appears to have been flawed at multiple levels.

At the very least, anyone involved in studying this illness should have recognized immediately that suggesting patients have an altered “effort preference” would automatically be interpreted to mean they were choosing voluntarily to do less rather than that they were unable to do less–after all, that’s what the word “preference” means in standard English. The selection of words was insulting and tone-deaf—just like the decision to call an illness “chronic fatigue syndrome” in the first place.

There has been significant pushback on this issue from multiple quarters. The smart folks on the Science For ME forum dug deeply into the problems with the research behind this construct. Most recently, Jeannette Burmeister, a lawyer, longtime patient and advocate, has published a blockbuster, four-part series on her blog, Thoughts About M.E., that is scathing, highly detailed and well worth reading. I’m not a statistician so I can’t vet all the issues raised, but I agree with the thrust of Burmeister’s prodigious analysis as well as the commentary on the forum. This whole thing is one big mess.


Australian news coverage of kids with Long Covid

ABC News in Australia published a compelling and in-depth (almost 5,000 words) account of kids with Long Covid. As the story notes, too many of these young patients continue to have their medical concerns dismissed or ignored. The piece includes interviews with both David Putrino, a native Australian who now works as rehabilitation director at Mt Sinai, and Todd Davenport, a professor of physical therapy at University of the Pacific in Stockton, California. Here’s a short section:

For Dr Putrino, one of the biggest hurdles remains the misconception that children don’t suffer long-term consequences after catching the virus. ‘I think that there’s an enormous amount of education that needs to happen to inform parents that yes, your kid can get long COVID. Yes, it could be the reason why they’re struggling in school right now,’ he says. ‘Get it checked out — don’t sit around and just assume that they’re going through puberty or they’re just extra moody; don’t sleep on it. Make sure that a doctor evaluates them. Make sure it’s a doctor that’s knowledgeable and educated about long COVID.’”


The Sick Times and Leonard Jason on the National Academies’ new Long Covid report

The National Academies of Sciences, Engineering, and Medicine (NASEM) recently published a wide-ranging report called “A Long COVID Definition: A Chronic, Systemic Disease State with Profound Consequences.” The Sick Times has become a very helpful venue for explaining new developments in the field, and a recent article covered this report and a related one from NASEM. Here’s part of the publication’s summary:

“*With NASEM’s definition, Long Covid symptoms must be present for at least three months “as a continuous, relapsing and remitting, or progressive disease state.” However, the report emphasizes that doctors do not need to wait three months to begin monitoring patients or prescribing potential treatments to alleviate symptoms.

“*The definition includes a wide range of symptoms covering all parts of the body, as well as different conditions that may be diagnosed alongside Long Covid, including cardiovascular disease, cognitive impairment, blood clots, chronic kidney disease, forms of dysautonomia, ME/CFS, mast cell activation syndrome (MCAS), connective tissue diseases, and autoimmune diseases.

While many praised NASEM’s efforts, Leonard Jason, a professor psychology at DePaul University in Chicago, had a more critical perspective. He outlined his concerns that the criteria are too broad in an opinion piece published on MedPageToday. Key paragraph:

“Here is the problem: a person can meet these proposed long COVID criteria by merely having one symptom that is not a burden to the person or does not have any negative impact on the person’s functioning. If a person has trivial pain in the toe for 3 months following COVID infection, with no negative consequences to the person’s functioning or quality of life, that person would still be eligible for a long COVID diagnosis. The failure to list any thresholds of frequency or severity of symptoms, so that the symptoms are not trivial, has major consequences for an infection that is as widespread as COVID.” 

5 thoughts on “Trial By Error: Some Things I Read This Week–Scathing “Effort Preference” Analysis; Kids with Long Covid; National Academies’ Long Covid Definition”

  1. Hi, First of all thanks for your great work over the Last years! 🙏🏼

    What do you think about the NASEM LC criteria? In my opinion it’s kinda harmful to ME patients, because as shown in studies round about 50% of LC patients actually have PENE and with that they have ME. Why would you rename ME to Long COVID now? It doesnt make sense, but it Happens again and again at the moment in Most Research papers im Reading.

    We all know ME is often triggered by Virus. SARS-CoV-2 is another one of those triggers obviously. But it’s the only one that got its own Name…or do we call ME after EBV now “Long EBV” or Long Influenca or Long HHV-6?

    To me it’s the Same that happened in the 80s with the CFS Label. Now they Put LC Label and ME kinda vanishes or they use people with PENE and without PENE in drug trials, which is kinda stupid.

    Would Love to her your take on that and maybe read more about it here. Thanks

  2. Lady Shambles

    Jeannette Burmeister must be congratulated on her mammoth expose of the NIH Intramural study. She is one of the no-nonsense advocates who understand this disease from the bottom up. It’s a huge undertaking even if one were well.

  3. 2 – 1/2 years long covid, headaches daily, migraines almost as often… Never had a headache in my life before covid. Ruined my life.

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